Life, family and unshakeable faith

No man is an island. In one form or another, we all need help. Isolation, as tempting as it can be, will not achieve the purpose for which you have been created.

Your life: the good, the bad, the ugly, can help someone else in their journey.

I wonder what your journey could teach me? I hope I will always stay open to that.

I wanted to write today’s blog to help you. It’s also written to help me and people like me.

You see, when I was first diagnosed with Motor Neurone Disease (MND) or ALS, I was not familiar with disability. I knew of it, I had touched it, but I hadn’t been immersed in it.

Four years on, I wouldn’t say I am an expert but I would say there are things I know now, I didn’t know then.

Those in my world would know I have started using a powered wheelchair (PWC) more often than not.

My leg muscles have progressively weakened over the past four years, but at a slow rate for which I am thankful. My neurologist reminds me rather bluntly, “you should be dead.” Well, I am not dead and I am very happy about that.

I have maintained by upper body strength, but in this part of my journey, it is difficult to walk, to balance, and there is a high risk of falling. One friend in Queensland with MND at a similar stage as me, expected to live at least another year and a half, fell, hit his head and tragically passed away.

That I have started using a wheelchair may come as a surprise to many. Especially those who haven’t seen me for a while and when they do I look physically ok. I’ve had someone say, “You don’t even look like you need a wheelchair!”

There is no way I would be using one if I didn’t need it.

If for no other reason than I love fast cars and these things don’t fit inside those. I rely on my family to help load and unload me and my chair. That aside, it’s the right thing to do.

Using my wheelchair is not giving up. It is actually the opposite. I use it to fight on, to stay connected, to have independence and to live life to the full.

Do I wish I could walk like everyone else? Yes.

Do I wish I did not have to use a wheelchair? Absolutely.

Am I giving up? No. I am trying to stay alive!

Can I walk? Yes, for short distances.

Should I walk? No, not often.

I can walk short distances but I am safer in public to use my wheelchair. Muscle fatigue can cause me to be off-balance and at risk of falling.

My wheelchair has thousands of dollars worth of support and cushioning to support my core and backside so I’m more energy efficient and comfortable in the chair when out and about. By using the chair, I’m able to conserve energy for the more private necessary walking, personal care and even driving every now and then.

Recently I was travelling by plane with my wife Lenore. While waiting for the gate to open, a flight attendant came towards us. She glanced at me in my chair and then proceeded to ask Lenore, “Will he need assistance to get on the plane?”

Their conversation about me went on while I was sitting there.

My wife is now an expert at this situation, and is helping direct the person speaking back to me when I am the topic of conversation.

Just because a person is in a wheelchair doesn’t mean they don’t exist, cannot comprehend, speak for themselves or make wise choices.

On the other hand, I was in a store, Universal Store in Charlestown, and the young shop assistant walked confidently up to me and asked, if she could help move anything around to make it easier for me, to please let her know. I was so impressed. She got it.

In brief, some of the things I found helpful in navigating this new part of the journey and hopefully has made me more aware of others in chairs too:

Speak directly to the person.

If you are in a moving crowd, be aware the person will need to stop the chair before they can shake your hand.

Treat the chair as an extension of the person. Touch it as you would someone you were speaking to, but don’t lean on it, hang things on it or take over the controls without checking first.

Focus on the person, not the disability.

Always ask if the person would like assistance and accept their answer.

Express yourself naturally. It’s ok to say “let’s go for a walk” or “let’s walk to the café” even if the person can’t “walk” – just be yourself!

Keep your feet safe and clear. Chairs are heavy and the tyres are solid. The person driving it can’t see behind them and doesn’t want to hurt you.

View the chair as a means of freedom to move independently.

It’s ok for children to notice and ask questions. Adults discouraging a child from talking can be more confronting.

If talking for an extended time, and the person isn’t able to raise their chair to eye level, find a seat so as to be at eye level with them.

I hate the idea of blocking someone else’s view due to the size of the chair. From my experience, people in chairs are more than ok with being asked to move if they are in the way.

If you want a person in a chair to move forwards, backwards, or out of the way, just ask as you would an able-bodied person.

Related

Admin

15 thoughts on “Straight talk: wheelchairs etc.”

Bless you Phil, with you all the way! Those 13 rules should be inserted into the Qld school curriculum, stuck on toilet doors everywhere and pretty much learnt off by heart by everyone who has two legs and can still use them!! Sending you and Lenore big cyber hugs xx Hazel O

Totally 100%agree with your every comment. My late Husband had exactly the same thoughts and things happen when he finally started using a wheelchair. Great article. Proud of you and your wife Phil. Your an honest courageous Team. God bless you both heaps. Liz Standen-Penn

Great advice, Phil. I especially liked this part:
“Using my wheelchair is not giving up. It is actually the opposite. I use it to fight on, to stay connected, to have independence and to live life to the full.”
I wish I had your wisdom and humility when I needed, but refused to use a wheelchair. It took broken bones, broken tooth, a bad concussion and several hospital visits to convince me to finally give in to the wheelchair. I now tell people with ALS/MND to get into the wheelchair as soon as your leg muscles begin to weaken.
God bless you, my friend.

Thank you Phil for sharing this, as I am now at the stage of needing a wheelchair though I can walk a little bit (mine is CMT not MND, though my phrenic nerve is now affected so it’s similar… Your sharing these blogs paves the way for others, so thanks

Thanks Phil for writing about your experience with MND. My step father recently died. He died 14 1/2 months after he was diagnosed but we all believe the onset of his MND was at least 12 months prior to his diagnosis. His MND moved very fast. He wasn’t considered palative but was considered high care when he died. we are thankful he did t have to go to the end.

Thanks so much for your “Straight talk” Phil, so good to hear an honest opinion and suggestions!
So blessed you are still around to do God’s work! You are such an inspiration!
Looking forward to seeing and hearing from you on the 30th at Living Word Lakeside.

Hi Phil, I enjoyed your thoughts and identified so readily with all of them; but most of all when you described the person talking to your wife instead of to you directly. That is the part of wheel chairing I find the most challenging of all; but it’s pride that gets wounded. I heard you were down this way (Albury Wodonga) speaking recently, unfortunately I couldn’t make the journey, I have been looking forward to seeing you somewhere.

Really appreciated this post. It was a good reminder for me with how I deal with my patients each day. I had a lovely young girl with an intellectual handicap last week who came in with her Mum. I usually would have just spoken to the Mum but I remembered reading your post and spoke directly to the young girl. Thanks for sharing your thoughts/wisdom with us. Blessings, Carla